数据集创建和数据清理中的性别变量,以实现包容和准确的生殖健康研究和质量改进。

Julia C Phillippi, Andrew Wiese, Sarah F Loch, Wei-Qi Wei, Henry H Ong, Gilbert Gonzales, Stephen W Patrick
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引用次数: 0

摘要

介绍:现有数据通常用于生殖研究和质量改进。电子健康记录(EHR)中只有一个性别数据字段,它混淆了出生时的性别、基因型、性别认同以及解剖组织和器官的存在。这对于将变性人和性别多样化人群纳入研究是有问题的。本文讨论了从电子病历记录中提取单项性别变量的注意事项,并介绍了一种审计方法,以确定变量作为围产期研究中纳入或排除标准的有效性:通过电子查询确定了2010年至2022年在一家大型学术医疗中心活产的个体,并审查了包含男性人口统计学信息的记录,以验证:(1)电子病历中患者的出生日期和分娩日期是否与病历号相符;(2)男性的性别和人口统计学信息;以及(3)电子病历记录中的男性性别术语:所有男性分娩者(n = 8)的健康记录都有电子健康记录证明其在该时间段内在医疗系统内分娩,且出生日期与电子健康记录的病历号相符。所有患者的电子病历人口统计学信息中都有男性性别。六名患者的电子病历记录中没有任何男性性别术语,只有女性性别术语。有两份记录在最近的记录中使用了男性性别术语:讨论:目前的电子病历可能没有关于不同性别患者的性别数据。在没有额外记录审查的情况下,不应将电子健康记录中的单一性别变量作为健康研究或质量改进的纳入或排除标准。可以更新电子健康记录,收集更多有关性别、性别认同和其他相关变量的数据,以改进研究和质量改进。
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Sex and Gender Variables in Data Set Creation and Data Cleaning for Inclusive and Accurate Reproductive Health Research and Quality Improvement.

Introduction: Existing data is often used for reproductive research and quality improvement. Electronic health records (EHRs) with a single data field for sex and gender conflate sex assigned at birth, genotype, gender identity, and the presence of anatomic tissue and organs. This is problematic for inclusion of transgender and gender-diverse populations in research. This article discusses considerations with a single-item sex and gender variable drawn from EHR records and describes an audit to determine variable validity as a criterion for inclusion or exclusion in perinatal research.

Methods: Individuals with a live birth at a large academic medical center from 2010 to 2022 were identified via electronic query, and records with male demographic information were reviewed to validate (1) the patient's date of birth and delivery date in the EHR matched the medical record number, (2) male sex and gender demographic information, and (3) male gender terms in EHR notes.

Results: All health records of male birthing individuals (n = 8) had EHR evidence of giving birth within the health system during the timeframe, and the date of birth matched the medical record number of the EHR. All had male gender in the EHR demographic information. Six patients did not have any male gender terms in available EHR notes, only female gender terms. Two records had recent notes using male gender terms.

Discussion: Current EHRs may not have reliable data on the gender and sex of gender-diverse individuals. A single sex and gender variable drawn from EHRs should not be used as inclusion or exclusion criteria for health research or quality improvement without additional record review. EHRs can be updated to collect more data on sex, gender identity, and other relevant variables to improve research and quality improvement.

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